Wet and Aggressive Corella challenges Magpie

Wednesday, 2 March 2011

MS and me

Antarctic - heaven on a stick

Not a scientific post, not a medical post, just musing on what having MS has meant for me personally. Not least of which is to be grateful for a black sense of humour.

I was diagnosed during MS awareness week eighteen or nineteen years ago. With the benefit of the twenty twenty vision that hindsight bestows I had MS for a good ten years before the diagnosis. My overwhelming feeling when I was told was one of relief. There was something wrong, I wasn't a hypochondriac and I could start to tackle it. And, if you have to acquire an incurable disease there are many worse ones about.

I was working in disability policy at the time (oh the irony of it) and after some time off returned to work. My then manager took to speaking slowly and loudly to me and using little words. I asked her to stop. She didn't. So, in an interdepartmental meeting when she did it again, I dropped my jaw and dribbled at her 'whats that u say, I dindna unnerstand'. She was mortified. I should perhaps be ashamed but am not. And while I don't think it did my career any good I think she learnt something (though perhaps it was just not to push me too far).

Over the next few years a pattern developed. I would have a relapse and take a few weeks off. I would go back to work and get more and more tired. Tired to the point of nausea. Tired to the point where as soon as I got home from work I went to bed. Where I spent most of every weekend. So, I started working part-time. And too soon for my liking discovered that really wasn't practical either. So, I was invalided out of the paid work force.

And discovered that for me at any rate, at a lot of my identity was based around what I did. So I became a voluntary telephone counsellor with Lifeline. Which has been magical. Some shifts are gruelling. Some calls have made me weep for and with the callers. Some have terrified me. Some callers have made me smile until my face hurts. And the sexual fantasy callers (Lifeline is cheaper than the sex lines) piss me off big time. But whatever is going down in my life at the time I have never completed a shift without feeling grateful for the life I lead and the people I love. And now I am a supervisor for other telephone counsellors too. The organisation asks a lot. Ongoing compulsory training and supervision. Regular shifts. Professionalism. Acceptance of difference. And I am not yet even contemplating giving it up. And since the end of last year I provide peer support over the phone to other people with the dread disease.

Physically MS can be hard. I move less freely. I drag a leg a bit. I am as flexible as a brick. I have, as I whinged on an earlier post, got stuck on the toilet. There is significant pain. Teemed incongruously with reduced sensitivity. My epidermis is much less sensitive and, as a result, having treatment at the hospital late last year I was burnt (and blistered) when I didn't realise that the warm damp cloth the staff had applied to bring up a vein was in fact hot and wet. I knew I had reduced sensitivity in my feet and legs but hadn't realised it extended to my hands and arms. The pain is deep pain and can wake me (and the smaller portion) shrieking. It doesn't disturb Jazz the psycho cat. My hands shake and my fine motor control is shot. My handwriting is less legible. I am dangerous with kitchen knives. Sometimes I lose (fortunately so far temporarily) my vision. All these things are irritating, but so far manageable. I once wanted a pumpkin curry and had no-one available to cut it up for me. So I threw it onto the back deck where it shattered quite satisfactorily. And I like that curry anyway but it tasted particularly good that night.

Heat is an issue. On hot or humid days my symptoms are exacerbated. At the worst I fall over. On the plus side apart from a trip to Antarctica five years ago I haven't needed a coat at all. And that is a significant plus in Canberra where it can get chilly. I can go out and collect the papers in my bare feel quite happily. On the negative side I would love to go to glass making classes. However the temperature issues teemed with my shaky hands means that option is out. Sigh. But not a huge price to pay.

Fatigue is also a big problem. Not relieved by having a nap/going to bed early. And I often don't get any warning. I can be going along quite happily and then, whammo, I am stuffed. So I have to stop before I am tired or pay the price. Which I often do find myself doing. So now I use the pain/gain equation. When I want to do something which I know will exhaust me I weigh up whether the pain is worth the gain. And I think all of us have to play that game to some extent anyway.

My memory is shot. So I write lists, ensuring that at least one thing on the list is easy so I can cross it off. And it means I can reread books. In murder mysteries I may not remember who died, much less who killed them. I lose words - cannot get them out of my mouth. So I have to resort to mime. Difficult on the phone.

There is plenty of scientific research underway into finding a cure. Fingers crossed. However I have real reservations - most of what I have seen so far concentrates on treating the symptoms which are highly variable). And I believe finding a cause is integral to finding a cure.

15 comments:

I'd write more at the moment, but the wind outside is sounding alarming and I fear we are about to lose our electricity. So, I will send while I still have a connection...! (Sounds rather metaphorical, as you were talking about energy levels, etc.)

Got the electric back after 12 hours, which is pretty good. I don't like wind much either.

One thing I've come to realize is that people who don't live with something like MS, or a similarly chronic, severely life-affecting illness, don't understand the intensity and degree of what you're describing--that this isn't just a matter of forgetting where the keys are or needing a nap in the afternoon, or feeling a bit low on a hot day.

You've told me far more about MS than I knew. I too deal with chronic pain, and I too have lost a great many brain cells because of it--and because of the narcotics I take for it. Anyway, I had rather have what I have than what you have, but I heartily wish that neither of us had anything. When I hear people talk about how thankful they are to have had some dread disease (like Michael J Fox and his Parkinsons), I completely and unhesitatingly DO NOT RELATE.

I'm so glad Ann sent you around. I often write about religion and atheism, and often get flak about it, mostly from people who think that matters of faith should be immune from critical analysis. So, it's really great to know that my thoughts resonate with many people.

P.S. I just noticed that you appear to be brand new to blogging. I hope you enjoy it. You write well, and you have a lot to say, so I'm sure you will. In case you don't know this, I'll just mention that you can put MS (or anything else you're interested in) in your profile, and then click on the word and be directed to a list of every Blogspot blogger who has the same word in his or her profile.

I also see that you like cats. My wife and I got one in December when our schauzer died (we got our last cat in 1971). We went looking for another dog, but came home with a cat instead. If you scroll down my page a bit, you'll come to photos of him.

Paper Chipmunk: glad you are back and that you were not powerless for too long. I often think that there needs to be better words to cover some of our symptoms. Fatigue doesn't begin to cover it. And I meant it quite literally when I say that I can get so tired I feel sick (and have been sometimes).

Snowbrush: thanks for the hint it was new to me and I will have to experiment. You are right that blogging is a whole brand new world but I am finding it addictive. And I loved that you too are not thankful for your health issues AND IT HASN'T MADE ME A BETTER PERSON EITHER.

However, as an aside this makes me safe from becoming a murder victim. Have you noticed how often they are described as 'truly wonderful person, no-body had a bad word to say for them'.

That was a fab post. It also explains why Jazz goes to such lengths to get a physical reaction from you (doesn't excuse it though!). I have a 91-yo friend, and every week when I come away from her I forget all my niggling little pains and troubles and feel young, fit and thankful. And I do again today, thank you. You are wonderful and resourceful, and I'm sure you've saved a lot of lives in your Lifeline time.

Wonderful post, honest, real, well-written. You lay it all on the line without asking for sympathy, and yet everything you say reaches out to me with such strength and clarity, I understand, and admire you all the more. Thanks for that. Take care, my friend.

Thankyou all. I was feeling a little anxious about exposing myself (so to speak) and have been reassured. And I am chortling to myself about the image of someone checking out the occupant of the casket to ensure it was the person he knew. Thanks Snowbrush.

I now know more about MS than I ever did. I'm glad you've found blogging, it's a great way to make friends and an outlet for thought, hopes, fears, somewhere to share your photos....I'd like your recipe for pumpkin curry.